Removal of rectum

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Joannie Crohnie
Regular Member


Date Joined Oct 2005
Total Posts : 68
   Posted 12/9/2005 7:11 PM (GMT -6)   
I've had an ileostomy since 1990 due to Crohn's.  When my surgery was done, my rectum was left in with hopes of reconnection down the road with new progress, etc.  No problems til the past few years with multiple draining fistulae from the rectum.  I'm currently on Remicade and Imuran hoping for a miracle to close them all.
 
I've had surgery discussions with my GI and a surgeon.  I'm not planning any soon but I wanted information from them. 
 
My question is for those of you who have had your rectum removed and sewn up.  Did you have alot of problems healing down there?  I've heard that, due to the area, it takes alot longer to heal.
Joannie
 
Here's a little something I've been self-prescribing since Crohn's became part of my life in 1985.  Some days I take really high doses and other days I don't need it at all.  It's the only prescription that doesn't come in a bottle, you don't have to consult a physician before taking it and it doesn't cost you a cent.  It's called LAUGHTER.......


Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 12/10/2005 2:29 PM (GMT -6)   
Hi Joannie.

I don't know why it is that some people have more problems with healing than others when it comes to rectum removal.

I was very fortunate because I can honestly say that I didn't have anything that I can say was painful down there at all. At first I would get a strange sort of twinge,or more of a soreness realy,but it was just a slight discomfort not painful. And healing wise,it was almost like nothing had been done there at all. I was very very surprised.

I can only say that I hope the same for you.

Sue


Joannie Crohnie
Regular Member


Date Joined Oct 2005
Total Posts : 68
   Posted 12/10/2005 8:09 PM (GMT -6)   

Hi Sue,

Thanks for your input.  I remember the twinges/soreness when I had my ostomy surgery...it was quite uncomfortable for the first few weeks.  All I can think about is trying to heal a spot that has constant strain from sitting.


Joannie
 
Here's a little something I've been self-prescribing since Crohn's became part of my life in 1985.  Some days I take really high doses and other days I don't need it at all.  It's the only prescription that doesn't come in a bottle, you don't have to consult a physician before taking it and it doesn't cost you a cent.  It's called LAUGHTER.......


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1181
   Posted 12/11/2005 2:12 AM (GMT -6)   
There are two ways of removing the rectum. The first is to remove it and then sew you up down there. This way seems to heal the quickest.

The second, and most preferred way, is to leave the wound open and allow it to heal from the inside out by just packing it. This way leaves you less prone to infection but does take longer to heal.

It's up to your surgeon as to which way they do it.

I was sewn up and didn't have many problems at all.

http://www.ostomates.org
I'm not a complete idiot - some parts are missing!
________________________________________________

Ileostomy for 29 years since I was 10 years old, due to UC.


bluflower
New Member


Date Joined Feb 2010
Total Posts : 2
   Posted 2/8/2010 8:19 PM (GMT -6)   
I'VE REALLY BEEN FEELIN ALONE TIL i FOUND THIS SIGHT I KNOW ITS RARE TO HAVE THIS DONE AN EVERY TIME I THINK IT'S CLOSE TO HEALING I GET ANOTHER BIOPSY AN THE HEALING PROCESS BEGINS AGAIN. I'M A 38 YR OLD FEMALE THIS WAS DONE TO ME DUE TO A TUMOR BLOCKING THE PATH TO USE THE RESTROOM WITH A PROMISE TO BE PUT BACK THE WAY THEY FOUND ME. AFTER CHEMO AN RADIATION FAILED... AN I WAS FOUND TO HAVE MRSA YET THEY COULDN'T SEEM TO FIND TIL THEY openED ME AN FOUND MY TUMOR ENCASED IN 8 INCHES OF MRSA AT THAT POINT I WAS WELL UNDER AN THE DISCUSSION TO SPARE MY LIFE AND REMOVE.. WELL HERE I AM.. BURNING INCHING BLEEDING IN ALOT OF PAIN AN THEY DIDNT REMOVE IT ALL SO I WAS LEFT TO FIGHT THE CANCER AGAIN CHEMO AN RADIATION NOW ALONG WITH HAVING MY RETUM REMOVED THERE IS SO MUCH SCAR TISSUE MY VAGINA HAS BEEN BLOCKED.. I HAVE A WONDERFUL BOYFRIEND HE'S BEEN GREAT THROUGH All THIS AN AFTER MY SURGERY AWHILE AFTER I WAS ABLE TO PERFORM IN THE BED.. ONLY AFTER THE SECOND BOUT WITH CANCER DID I FIND I WAS CLOSED UP.. SO I GUESS THE QUESTION IS, IS THIS NORMAL YOU GIVE UP ONE YOU LOOSE THE OTHER. I'VE RECENTLY CHANGED DOCTORS MY OLD ONES CLAIM I HAVE DISPLACED ANGER LOL AN THE NEW HAVE OFFERED ME RECONSTRUCTIVE SURGERY. MY BOYFRIEND IS HAPPY WITH ME AS I AM BUT I REALLY FEEL LIKE A BEING WITHOUT A SEX... I'VE AS WELL CHASED OFF FRIENDS FAMILY AND THOSE I DIDN'T CHASE OFF WELL LETS JUST SAY THEY MUST OF THOUGHT MY CONDITION WAS ALIL HARD TO HANDEL..... ANY RESPONSE HELPFUL OR JUST TO VENT YOURSELVES WOULD BE GREATLY APPRECIATED.... BLUFLOWER IN SC

Contessa
New Member


Date Joined Feb 2010
Total Posts : 2
   Posted 2/10/2010 7:30 AM (GMT -6)   
Well I had my rectum removed 2 yrs ago and the surgeon sewed(??) me up. Beautiful job!! The cheeks fused together as if nature did it herself! Although it's been 2 yrs and I still have daily nursing care to clean and repack a small wound that just won't heal. I'm now scheduled for a surgery to fill the wound. I guess I'm trying to tell you, that no one warned me it could take this long. I am a very healthy 34yr old and recovered great from my ileostomy surgery so I thought this would have been a breeze! Since my removal I have met 3 other women who have struggled a few yrs before healing. I don't want to be the bearer of bad news, but I wish I had known that it could take this long ( and not the 6 weeks I was originally told it would take to heal). It's caused a lot of mental struggles, but I would do it again in a heartbeat! I hate my having my Ostomy, but love the life I will have with it!!

Alittlelighter34
Regular Member


Date Joined Nov 2009
Total Posts : 24
   Posted 2/10/2010 11:42 AM (GMT -6)   
I had it done (sewn shut) with minor pain afterwards and no pain now (almost 4 months later). Most of my Crohn's was in the rectal area, so I had no choice. I'm glad I did it. I had no complications, and it healed up very quickly.
10 years of Indeterminate Colitis, and total procto-colectomy with ileostomy on 10/16/09! SO far so good!


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 2/10/2010 8:00 PM (GMT -6)   
Ok I want to know?  Everyone one keeps saying they take your rectum?  Do they sew shut your butt?  Sounds silly but I was wondering? 
Leslie King


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3039
   Posted 2/11/2010 7:24 AM (GMT -6)   
Leslie~when they remove the rectum they also take the anus and sew that area together (or leave open and have it packed daily). They don't sew your whole butt closed...my butt looks the same, just doesn't have a hole!!

When I had my proctocolectomy my doc did sew me shut, but about 6 months later I did have an abscess in the area that had to be surgically cleaned out...not a big deal and I did have a wound vac for a short time (as much as insurance allowed) then went to packing the area for a couple months. No problems since:)

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 763
   Posted 2/14/2010 12:55 AM (GMT -6)   
I had rectal Cancer cells showing and bad crohn's in whole colon so i got the big clean out. They sewed my anus shut and other finding a staple they had missed a couple weeks later the healing was quick and easy.

I took tons on soak baths and sitz bathes. At least twice a day the first 6 weeks and put scar cream on to help seam look. Don't really care how it looks as long as I can stand my bike seat. Which I am happy to report I can for 2 hours a day now and will work back up from here.

Started riding again at 6 months. Was rather impatient at first waiting to feel better, but it has come a long way. Am so thankful to be able to say that.

There are certainly many variations here. Hope yours turns out well.
This heights by great men reached and kept, were not obtained by sudden flight, but they while their companions slept, were toiling upward in the night.
H.W. Longfellow
Thyroid cancer removed 1988
Stomach problems finally figured out 2001 Crohn's/Colitus
Tried every drug without much success
Colon/rectal cancer removed Aug 2009
Trying


hvacchronie
Regular Member


Date Joined Oct 2009
Total Posts : 43
   Posted 2/15/2010 6:17 AM (GMT -6)   
Hi all, My GI team mentioned removing my rectum (currently have illeostomy singe 1996 with anus/rectum intact) after deciding I'm not a candidate for reattaching. My wife's (and my) biggest fear is they won't be able to chek me for prostate cancer. Any thoughts? NASCARron, what does your doc do about checking your prostate? BTW, Ron, We live in Kentucky: Enjoy Louisville!

SpiceInvaders
New Member


Date Joined Dec 2009
Total Posts : 3
   Posted 5/23/2010 4:00 PM (GMT -6)   
Just ran across your note while searching for info on bicycle seats suitable for proctocolectomy patients. Not sure if you've had surgery yet but here's my 2 cents. I'm currently 54 years old and have had Crohn's since I was 14. Had a partial colon resection in 1981 with a temporary loop ileostomy. It was actually temporary for nearly 20 years when I had a total proctocolectomy because a BA showed a suspicious filling defect in an area that was difficult to scope. I remember having the same conversation with my surgeon. His response was more or less along the lines "They have PSA tests for that. Besides, you don't have to worry about prostate cancer for another twenty years." Came to a mutual decision that the risk of colon/rectal cancer was greater than the risk of prostate cancer so I had the surgery (no signs of cancer in any of the biopsies, by the way, you roll the dice and you take your chances).

Two years later my PSA started going up. Normal ultrasound-guided biopsy was a non-starter so I eventually had a series of CT guided biopsies. I think the plan was to keep repeating them until they either got a positive test or until they succeeded in removing my prostate one needle at a time. By the time I had my fourth one or thereabouts, the radiologist was wondering whether I should just have my prostate removed. Given all of my previous surgery, that was likely to be a difficult procedure and I wasn't going to pull the trigger until I was sure. Finally got a couple of positive samples so the next step was figuring out what to do. Eventually went to Memorial Sloan Kettering in NYC and had Peter Scardino do the surgery. It was as difficult as everyone thought but, like Nietzsche said, that which does not kill us makes us stronger. We should all be some sort of superheros by now.

How old are you? If you are relatively young and haven't started the PSA ritual, I would at least get a baseline on that. If it is low and you have no family history of prostate cancer, I would concentrate on keeping the Crohn's/UC/whatever in check. If it is high or trending north, I would think twice about having your rectum removed unless there is a real compelling reason to do so. Given how everything turned out, would I have done the same thing over again? Probably yes. I had Crohn's long enough that the cumulative risk of developing some sort of associated cancer was starting to nag me. Plus, my GI mentioned some anecdotal evidence about the risk of cancer being even higher in patients with long term diversions. It's not pleasant but a good intervention radiologist can biopsy your prostate if it comes to that. Good luck.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1053
   Posted 5/23/2010 6:03 PM (GMT -6)   
I had a total proctocolectomy 2 months ago and chose to have my rectum removed as well. It was a little uncomfortable for the first 2 or 3 weeks, maybe, but not unbearable at all to sit on. Totally worth it.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 


Cali Girl @ Heart
New Member


Date Joined Feb 2012
Total Posts : 9
   Posted 2/2/2012 1:23 AM (GMT -6)   
I just had my rectum removed and my ab reconstructed.. after a colon rupture, sepsis and an emergency illiostomy last year. I fought for 18 years a loosing battle with atypical crohns disease, and was a medical nightmare.. now, I am trying to live again and adjust and stop fighting the "bag:.. I have been out of the hospital since 2 days post op and my own nurse.. thankful for a great strength and courage and the studies of mental illness when it comes to things like this.. I keep my mind engaged and active and still struggle emotionally daily.. the pain is bad right now due to a pelvic issue and my rectum being attached to my vaginal/pelvic area apparently.. this blog is great to read for me.. I have always done things on my own.. it was one emergency after another and so many allergies and bills from meds/trials etc.. I pray that facing my worst fear (the bag), will save my life and allow me to have one again...

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5400
   Posted 2/4/2012 8:36 AM (GMT -6)   
     I had my colon and rectum removed but the surgeon did not sew the anus closed.

fredewill
New Member


Date Joined Mar 2012
Total Posts : 1
   Posted 3/4/2012 6:31 PM (GMT -6)   
I had my rectum removed 14 years ago. If I do a lot of walking (2 or 3 miles) my "opening" gets itchy. I then have to swab it out with an over the counter antibiotic. Before I started doing this I would endure the itching for a few days. Sometimes when I swab it out there will be a yellow discharge on the Q tip. The opening I have left is about 1/2" deep. This condition keeps me off of thread mills and bike cycles.

Until I read this forum topic, I figured I would just have to live with it.

Ideals anyone?

65 active and otherwise good health

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5400
   Posted 3/4/2012 6:51 PM (GMT -6)   
      Fred, I am also 65!  I questioned my surgeon as to why he did not sew the anus closed and his answer was that there are more complications when that is done.  I did have a post surgery hematoma inside the anus about two months following my operation.  My surgeon went in there with an anuscope shocked ...thought I would go through the roof....suctioned it out and placed me on antibiotics for two weeks.  That is when I discovered I was allergic to Cipro...oy, what a terrible experience...flu like symptoms so bad I could hardly move.  Anyway, he changed me over to Bactrim and I was fine.  I had to return a month later and all was healed.  It has been 1 1/2 yrs since my surgery.  I still have mucus and some itching inside the anus and was wondering if this is important enough to make a phone call to my surgeon and ask what's up?  My rectum and colon were removed during surgery due to ulcerative proctitis.

uc_free
Veteran Member


Date Joined May 2007
Total Posts : 642
   Posted 3/4/2012 7:24 PM (GMT -6)   
I had a total proctocolectomy 3 months ago, and my butt was sewn closed (although it looks normal, as others said). I had absolutely no complications at all. My surgeon was a bit conservative about removing the stitches, and that became quite uncomfortable by week 4, but once they were out, no real problems since. I feel lucky based on some of the complications others have had.
Diagnosed with pancolitis in 1998
Tried everything but Remicade over a 14 year period and Imuran was really the only drug that worked before it stopped in 2010
Flared for a year and a half before spiraling out of control
Proctocolectomy with permanent ileostomy 11/29/11
Finally on the road to recovery

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/4/2012 7:55 PM (GMT -6)   
Hubby's was also sewn shut. So far no complications. It was done at the same time the colon was removed so it was also part of his initial healing and recuperation. I think for maybe 4-6 weeks it was the most tender and sitting and laying were a bit of a challenge until it healed but not excruciating either. It did throw his back out of whack though...he went to a chiropractor (1st time ever) for a few visits and she straightened that out easily and it has been fine since.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

allbluezoo
Regular Member


Date Joined Feb 2012
Total Posts : 446
   Posted 3/4/2012 9:36 PM (GMT -6)   
Wow, this is an old post :) I had total proctocolectomy and I have the hole that is closing from the inside out. It wanted to close from the outside in so we packed it for a week (out patient) then at my last appointment my WOCN shared a new (?) product to the surgeon and we are trying it for the week - some kind of powder with silver in it, similar to the aqaucel products but just different form. I did have the wound vac when I was inpatient and I am fighting to not have it now that I am home. So far the doc is playing along with me but every week she tells me I would be done by now if I would just put it back on. No thanks, I'll take my time :)

Cali Girl @ Heart
New Member


Date Joined Feb 2012
Total Posts : 9
   Posted 3/5/2012 9:34 AM (GMT -6)   
I do not have any of the vacs or powders or packing.. went to a colo-rectal surgeon through balt/wash medical center.. usually go to university (did go to johns hopkins)
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